'It's a ticking clock': mysterious neurological disease patients are calling on the government for transparency

MONCTON, N.B. -

Recent claims from an article in The Walrus that the New Brunswick government urged federal experts to keep quiet on the investigation into a mysterious brain disease have caused frustration among those who have been diagnosed -- and their families.

It's been nearly six months since the provincial government provided the public with new information on the unknown neurological disease that has only been found in New Brunswick. Those affected by this neurological syndrome, including 20-year-old Gabrielle Cormier from Dalhousie, N.B., are frustrated with the lack of transparency they've been given. This comes after a story by The Walrus, which claims that on June 3, the province asked members of a national committee to stop their work in investigating the disease.

"It's a ticking clock, you have to do this quickly because people are dying and getting worse," said Cormier. "In the beginning, I didn't really bother with all the politics and all of that stuff. But now I learn that was a lie and those people stopped doing research five months ago."

Cormier said she was diagnosed in April 2021 with a mysterious neurological disease. She started getting sick in October of 2019 but tried her best to continue studying through university.

"With all of the doctors and specialists that I thought were working on this, what if they had found a treatment to prevent me from getting permanent brain damage?"

Cormier said she has not suffered permanent brain damage from this disease, but it is one of her greatest fears if the cause of this disease is not discovered soon.

According to The Walrus, the same day the national committee was told to halt their research was the day, Health Minister Dorothy Shephard announced the oversight committee which is intended to find causes for the disease and seek expertise from federal and provincial physicians.

New Brunswick Public Health’s epidemiology and surveillance branch "developed an enhanced surveillance questionnaire for the investigation to better understand potential exposures," Health Department spokesperson Bruce Macfarlane wrote in an e-mail. "Public Health drew up the questionnaire and conducted the interviews.

Dr. Alier Marrero is the neurologist leading the team of researchers investigating the syndrome at the Mind Clinic. Their investigative work is exploring all potential causes including environmental, food, and animal exposures.

According to the New Brunswick Public Health website, 48 cases have been confirmed and nine people have died.

Some opposition politicians in the province, including Green Party MLA Megan Mitton, don't believe the investigation into the disease is being met with the urgency it deserves.

"It is very concerning if the Public Health Agency of Canada and the experts that were assembling were told to stand down," said Mitton. "That is confusing. Why would, especially in a pandemic, where we need all of the public health resources that we can get, why would the government refuse help from experts?"

Steve Ellis' father Roger Ellis turned 64 on Tuesday. It's days like this that serve as a reminder how quickly time is passing by, he said

"Every day that the government doesn't do anything is taking a day away from my dad's life," Steve Ellis says.

Roger Ellis is one of the 48 individuals included in the cluster. Roger experienced a rapid cognitive decline two years ago after experiencing a fall. He is now living in a home and being treated by Dr. Marrero.

"I've learned with this government to not have any expectations," said Steve Ellis.